Tag Archives: Disability

Rebecca Cokley & Never-Ending Diversity

28 Jan

Light Box Body(Image by Luca Rossato used under CC 2.0 via)

 

Leaving you this weekend with a link to an excellent personal essay and video published at CNN.com last month by Rebecca Cokley, a civil rights lawyer who worked in the Obama administration. The granddaughter of a segregationist judge, Cokley has achondroplasia and her average-size husband is African-American. She writes about the ramifications of these intersections for her two children who also have achondroplasia. She writes about the doctor who planned to sterilize her without consulting her. And she writes about the mistreatment she experienced at last year’s Women’s March:

People often act as though disabled people don’t have a right to bodily autonomy. When I attended the women’s march in D.C. in January, I was repeatedly grabbed and manhandled by women who wanted to know where was my mommy and why didn’t I know better than to wander away from her. They all looked shocked when I responded, “I am the mommy,” but not a single one apologized to me.

In the video, she also delves in to the many ways in which she and her family are privileged.

Profiles of people with dwarfism are rarely brave enough to venture beyond the comforts of human interest stories and into the very real but hard political realities. (I know. I google them weekly.) And most headline the subject as “small but [insert compliment here].” This piece is definitely worth your time.

 

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Aziz Ansari, #MeToo and the Problem of Empathy

21 Jan

(Public Domain image used under CC0 1.0 via)

 

Over this past week, articles about the allegations against Aziz Ansari by a woman known by the pseudonym “Grace” were the most read articles at The Atlantic, Slate, Salon, The New York Times, The Guardian, The Washington Post, New York magazine, and pretty much every feminist website from Jezebel to Bustle. Everyone from Whoopi Goldberg to Samantha Bee to Dr. James Hamblin participated in the discussion at some level, myself included.

Do you want to know what I think? I think feminist Jill Filipovic has summed it up best. But I also think it’s far more important to note that not one of these sites picked up National Public Radio’s week-long report on the epidemic of rape and sexual assault against developmentally disabled people, who are seven times more likely to be sexually abused than the general population, according to the U.S. Department of Justice. NPR kicked off the story by calling it “The Sexual Assault Epidemic No One Talks About.” Mainstream feminism proceeded to not talk about it, proving the point fantastically well.

Why has this excellent, in-depth report gone unnoticed while Ansari and Grace could only have garnered more attention if they were running against each other for president? You don’t have to be The Huffington Post to know that readers will pretty much always prefer a story involving a celebrity than a story about ordinary people, social groups and statistics. I knew too well that just putting Ansari’s name in the title of this article would up its chances of survival. Barbara Ehrenreich has been complaining since day two of the #MeToo movement that “there are far too many think pieces about high-level actresses and far too few about the waitress at your local diner.” Readers are also more likely to click on stories involving young adults and/or sex than stories about older people and/or anything bereft of sex. Ginia Bellafante complained this weekend about the endless analyses of Grace’s night with Ansari in contrast to the relative silence about the life and legacy of Presidential Medal of Freedom winner Dr. Mathilde Krim.

Anna North, who covers gender issues at Vox, argued for the relevance of the Ansari story, saying, “I mean, honestly, my first reaction was just sort of recognition. This is a situation that I’ve heard from my friends. This is – the behavior she describes through Ansari is behavior that I’ve heard men confess to in their own lives. So I thought, like, yep, this feels real familiar.” While this does validate discussions about dates like the one Grace had, it also explains the sad truth as to why it managed to bury NPR’s story about a sexual abuse epidemic. It is safe to say the majority of young adults writing and reading stories about social progress do not react to stories about developmentally disabled people with a “Yep, this feels real familiar.” Nor do they encourage each other to.

In my experience, most young adult feminists and social justice activists limit their discussions about developmental disability to stories about volunteering in a special ed class and debates about the word “retarded.” The issue of whether or not to screen for Down Syndrome in utero is an increasingly common discussion among pregnant women and their partners, but the opinions of people with Down Syndrome rarely take center stage in that debate.

Disinterest is not the only factor to blame. Accessibility, the issue most likely to leave disabled people marginalized in mainstream society, is what also leaves them isolated from the places where most social justice activists convene. People with developmental disabilities are the minority least likely to live on college campuses, and they are more likely to be socially integrated in small towns than in metropolitan areas. Few feminist and progressive publications offer versions of their articles in Simple Language

But while such barriers help us understand the marginalization of developmentally disabled people, there is little reason why we should accept them. Human rights means everybody. Feminism rightly declares the personal is the political, but this serves as a wall instead of a bridge when the personal experiences shared by the most people dominate the discussion at the expense of others. Empathy is rightly considered the best facilitator of communication in the fight for minority rights, but minorities will suffer when empathy is expected to come instantly, without the effort of learning about experiences other than our own.

There’s no reason why the #MeToo movement can’t talk about the issues exemplified by the Ansari story and the abuse epidemic endured by developmentally disabled people. There is, in fact, plenty of cross-over. During a week when the second Women’s March has pledged to be as inclusive as ever, it would be great to start a discussion asking the women who clicked on the Ansari story why they didn’t react to headlines about the epidemic. In the multiple arguments that #MeToo should teach women to show more agency and take self-defense classes, it would be great to recognize that disabled women are one group for whom self-defense classes are rarely helpful. In the same way social justice activists are helping the long marginalized experiences of LGBTQIA+ people to broaden society’s ideas about sex and gender, they could help the experiences of disabled people to broaden our ideas about what it means to be independent, strong, accomplished and attractive.

Justice will be done when reports like NPR’s about the abuse of developmentally disabled people shock the world and in doing so make it to the The New York Times’ Most Read list. And when the online March for those with disabilities who could not join an outdoor protest actually gets mentioned in the national reports about this weekend’s Women’s March. Until that day, mainstream feminism reveals its empathy to still have its limits.

 

 

How to Insult 10 Different Kinds of Families with One Campaign Poster

17 Sep

Bundestag(Image by Michael Fötsch used under CC 2.0 via)

 

I was riding the bus home from work earlier this week through downtown Berlin when I caught sight of this campaign poster for the Alternative für Deutschland party. Featuring a white woman’s visibly pregnant belly, it reads: “New Germans? We’ll make them ourselves!”

Talk about a punch in the gut. At first glance, the poster appears to be promoting closed borders and “traditional” family values. But it can never be read free from the history of the Nazis’ obsession with using women to make white, Christian, non-disabled babies. Lebensborn was an association built expressly for that purpose. Women across Germany who had four or more children and who were not branded degenerates were awarded medals by the Third Reich. Anyone who has gone to school in Germany knows about all this.

It would be perverse to claim this AfD poster is more upsetting than any of the others, which target burqas, halal cooking and the idea of multiculturalism. But as a woman with both a residence permit from the immigration office and a disabled ID card in my pocket, I felt the attack personally. The deep sadness then turned to desperate hope that the poster escaped the view of those who are more likely to be targets of street harassment than I am (people of color, LGBT couples and religious minorities), and anyone returning from a fertility clinic or an adoption agency.

Germans go to the polls next Sunday. Over the last ten days the AfD has been projected to win between 8% and 12% of the vote – far behind the top two parties, but fighting neck-in-neck with the Greens, the Left, and the pro-business Free Democrats for third place. As long as they reach the 5% minimum necessary for earning seats in the Bundestag, a difference of three or four percentage points will technically have little effect on the AfD’s ability to influence policy. Because all the other political parties have refused to work with the AfD, it will not be able join a coalition. But coming in third place instead of fifth or sixth will make a big difference in the post-election narrative. Both critics and supporters of the AfD will claim that Germany is shedding some of the post-WWII taboos and political correctness that have defined its democracy for the past 50 years.

Many voters here tell me they hope the AfD’s success in next week’s election turns out to be a one-hit-wonder that quickly falls apart like so many small parties have done before. But no matter what happens on September 24th, it is important to remember that the 12% of voters who have ever been sympathetic to the AfD and its xenophobic politics have been around for a long time.

Unlike the ostentatiously angry Nationalist Party, which has never come close to garnering 5% of the vote, the AfD has sought success by branding itself the moderate voice of xenophobia. They hope to appeal to conservatives and left-wingers alike who worry about multiculturalism gone mad. Most of their voters like to think of themselves as open-minded, not hateful. They just think there need to be restrictions on immigration because they’ve heard tales of towns overrun by foreigners who don’t know how to put their garbage in the bins. They just want to ban burqas and niqabs because sexism. And Islamic holidays and symbols should not be prominent in public or in schools because Germany should be recognized as a Christian nation. They don’t mind that the AfD’s candidate for chancellor is openly lesbian. It would just be nice to put an end to all this talk about LGBT rights. They tell my friends and me that when they complain about immigrants, “I don’t mean you.” C’mon, they’re not Nazis. They’re just asking, “What about me?” If you’re gonna call it racism or sexism, then it’s the reasonable kind. The kind every person is born with. Common sense.

The short but bombastic history of the AfD proves that xenophobia in moderation doesn’t work. The party was founded by pro-business politicians who opposed the EU à la Brexit. These founders were soon driven out and replaced by the anti-immigrant populists of today. Every few months the party has had an internal war involving someone who said something that’s just too reminiscent of the Third Reich. On the outside, friends of color report more frequent street harassment since the AfD’s increased presence. The disability rights organization AbilityWatch reports the AfD was the only party who declined to respond to their issues. The gay and lesbian alliance LSVD rates the AfD the most homophobic of all the major parties despite its current leadership.

That campaign poster embodies all this. It’s what you get when you think some degree of xenophobia is reasonable.

 

Disclaimer: As noted before, no political party will ever be endorsed on this blog, but political threats to human rights and equality, both historic and contemporary, will always be analyzed.

 

 

Should You Avoid the Word “Inspiring” When It Comes to Disability?

6 Aug

lying body(Image by Crodriguesc used under CC 2.0 via)

 

Many of the [deaf, dwarf, autistic, schizophrenic, disabled, transgender & gifted] people I interviewed said that they would never exchange their experiences for any other life – sound thinking, given that exchange is unavailable.

– Andrew Solomon in Far from the Tree

 

Clichés are ideas, images, and sayings that are overused. They start off as messages that easily convey meaning. Such ease may at first be a sign of their success. But when they are repeated too often, they foster laziness. They hamper inquiry and innovation. We see a happy picture of a mother and child, we recognize it and all the uncomplicated feelings it is intended to convey, and we move on. Clichés hinder change and therein progress.

The opposite of a cliché has the opposite effect. It makes us pause, look again, consider the world and our assumptions about it, and—in the best case scenario—prompts a shift in us and our habits.

The term “inspiring” is cliché in the realm of disability, which is why it is on its way to becoming a taboo, if it hasn’t already. A boy who walks with crutches while flashing a smile is inspiring. The sheer willingness to face each day with lupus is inspiring. A runner with prosthetic legs is inspiring. Inspiration porn refers to such images in posters, human interest pieces, and memes, and their use as a reminder to a non-disabled person of how good they have it. This reminder is ever-so brief in comparison to the life situation that triggered it.

Inspiration porn is unrealistic but it has its roots in truth. Well-being is often achieved through a sense of gratitude and gratitude comes from having perspective. But the overuse of inspiration porn is problematic because it is one-sided. We are shown the simplicity of happiness but never the complexity of bioethics, the politics of disability rights, or the repetitiveness of chronic pain. The predominance of grinning patients is worrisome to disabled people because we could conclude from it that the world is only interested in us insofar as we are willing to repress anything contrary to the sunny narrative. This implies that the world is our ultimate fair-weather friend.

Inspiration porn can enable emotional vampirism. In the name of being “inspired,” we are often invited to watch someone with a disease or disability on reality TV, shed a few tears, congratulate ourselves for our willingness to dabble in sadness, and quickly move on to life as it was, perhaps lecturing others on just how hard others have it, while never considering our indirect role in any hardship. How many people say they have been “inspired” by Little People, Big World but then do nothing to change the U.S. policy on the U.N. Convention on Rights of Persons with Disabilities? I’m gonna say lots. Those addicted to emotional vampirism empathize in all the wrong ways, frequently muddling the truly tragic and the merely different.

But “inspiration” need not be unproductive. Watching and reading about disability, illness, and loss can ground us to humanity. After all, what else can – besides knowing someone personally? Such connections can lead us to genuinely understand the frivolity of our daily worries about job promotions, physical fitness, and that thing a supposed friend muttered to us that may have been a back-handed insult or may have been nothing at all. Having perspective is rarely a bad thing. There’s no harm in feeling gratitude—not pride, but gratitude—for every day that we do not have to endure intense physical pain or face probable death.

We can draw both good and bad conclusions from seeing someone doing something we didn’t know was possible. I am concerned when exceptionally talented disabled athletes are promoted as proof of why no one should ever take a break or not take risks. But I was suddenly overjoyed the first time I was treated by a doctor with a visible disability. (Seriously, I almost hugged him.) Representation feels good. Seeing is believing, to use a cliché.

History has proven that innovation and bravery are often contagious, as are idleness and cowardice. We’re social animals. Progress relies on our recognizing the world’s hurdles that need to be removed regardless of whether or not we have a personal connection to those they hold back.

But “inspiring” is overused. Maybe “humbling” is a better term. In this day and age, humility is so rare we may as well consider it radical. And how about “provoking”? When we see someone face struggles we can only imagine, we could ask ourselves if it provokes anything in us. And go from there. 

 

 

When A Hero Comes to School

30 Jul

IMG_7178(Image by Gordon Tarpley used under CC 2.0 via)

 

Leaving you this weekend with a short video of British actor Warwick Davis’s visit to a Nottingham primary school to explain dwarfism on behalf of Jasmine Chapman, a pupil with dwarfism who had asked Davis to come.

Davis has starred in a variety of block-buster fantasy films alongside the likes of Daniel Radcliffe, Val Kilmer, Diane Wiest, and Carrie Fisher. While his average-sized co-stars have had careers expanding far beyond the fantasy genre, Davis has not. This is frustrating.  As I’ve written before, it’s a problem that almost no disabled actors are famous, and the tradition of dwarfs in fantasy is complicated. Davis’s role in Ricky Gervais’s one-season-long series Life’s Too Short was even more so.

But most primary school children are unaware of all that. And sometimes that’s a good thing. I had a crush on Davis as a child after first seeing him in Willow in 1988. He had a lovely speaking voice replete with British accent and long curly hairy and he ended up the hero. I bought it. I was blissfully ignorant of the clash between adults telling me I could be anything I wanted to be and the reality of the job market for people with dwarfism at the time. Children need heroes.

I watch the video of nine-year-old Chapman sitting next to Davis as he explains that he and she are only different by virtue of their size and otherwise just like everyone else – sidestepping the intricate issues like chronic pain, necessary surgeries, disability funding, bioethics, political correctness, beauty standards, street harassment, and job discrimination. I watch the way he holds the kids’ attention by reiterating his lines as Professor Flitwick in the Harry Potter films. I watch it and I know that at Chapman’s age, I would have simply loved every minute of it.

 

 

How Far Can Our Imagination Go?

16 Apr

 

Years ago on The Daily Show, comedian Lewis Black offered a weak defense of using the R-word. In his tirade, Black yuk-yukked about the idea of a show starring developmentally disabled people. His joke was hilarious if you find the sheer idea of such a show hilarious.

Well, this week the German disability advocacy organization Aktion Mensch has published a video that asks, “What if disabled people got to be the stars in Hollywood movies?” As examined before on the blog, it is a genuine problem that almost no famous actors are disabled and almost no disabled actors are famous. So with that I leave you all the video above and best wishes for this holiday weekend.

 

 

Tax Day!

9 Apr

HELLO! HUMAN RIGHTS (Image by Andres Musta used under CC 2.0 via)

 

As Tax Day approaches in the United States and here in Germany, everyone will have an opinion as to which entities deserve public funding, and which are impractical, immoral, or evil. It is perhaps easier for me to remember that taxes not only support disabled people. Through health care, medical research, social work, education, and the justice system, they keep many alive. And they also help lessen the everyday physical pain experienced by some of us.

Even banal subsidies can make a substantial difference. As a German resident classified with a “Grade 50” disability, my ticket for all public transportation in the Berlin metropolitan area is subsidized so that I pay a fraction of the normal fee. This discount offsets the extra costs I regularly incur by needing to use taxis or a car rental for distances most other 35-year-olds would either walk or bike. By relieving me of this financial burden, I can have as much money saved as a pedestrian does to spend on food, clothes, rent, movies, music, houseplants, hair curlers, napkin rings, bubble gum, sealing wax, bath toys, or presents for my loved ones. Alternatively, it saves me the extra time I would have to spend walking and then recovering from the pain of walking – time which I can use to be more productive, which helps me qualify as a taxpayer capable of paying it forward to others in need of subsidies.

I have been called a freeloader. A disabled friend was told she should realize “what we have to do for you” – “we” being the non-disabled taxpayers. Many political theorists argue that the extra costs faced by disabled citizens should only be offset by privately run charities funded by donations from those who actively choose to be so morally upright. Others go so far as to advocate Social Darwinism, which would be a death sentence for many disabled people.

The intricate relationship between government and tax structures have occupied economists, political scientists, academics, philosophers, monarchs, and politicians since the legend of Robin Hood, and I have no intention of tackling it in its entirety here. But amidst the myriad points and counterpoints, one truth remains clear to me: A society that agrees to ease some of the burdens disproportionately placed upon disabled people is agreeing to ensure the existence of disabled people. And by doing so as the general public in a mandate to itself—instead of leaving it to the “good will” of a few individuals—this society tells disabled people they should be no more grateful to be alive than anyone else should. That message is crucial. While we all have varying abilities that shift in value throughout time and space, equality means that no one is altogether more important than anyone else. We must believe this if we want to claim to believe in human rights.

 

 

Rare Conditions & the Tyranny of the Majority

5 Mar

Odd One Out(Image by Javier R. Lineira used under CC 2.0 via)

 

Last Tuesday, February 28th, was Rare Diseases Day. (In leap years, the day is held on February 29th.) The organization’s website reports: “A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.” For the purposes of this article, I will supplant the word “diseases” with “conditions” since “disease” is a complex word already examined earlier on this blog.

Rare conditions are frequently misdiagnosed and poorly understood due to a lack of funding for research. All forms of dwarfism qualify as rare, since the most common form, achondroplasia, occurs somewhere between 1 in 20,000 and 1 in 40,000 births. Vosoritide, the drug developers hope may “cure” achondroplasia, is classified as an “orphan drug.” Such drugs are so named because of their difficulty in garnering support for research and development. The Orphan Drug Act of 1983 is intended to counteract this disparity, but vosoritide owes its existence to one father of a child with achondroplasia who had the financial means to launch the project.

However, I don’t think any of these facts were what motivated me as a child to ask my mother, “There are more dwarf people than tall people, aren’t there?” I knew the answer before my mother soberly shook her head. I remember that even at the time I knew I was issuing a hope rather than an honest question. I wanted there to be more of us. Because… Because even a four-year-old knows there is strength in numbers.

Numbers help build community and communities build solidarity. The women’s movement of the 70s, 80s, and 90s often touted the fact that we made up 51% of the world population. (This is no longer true.) Lists of adopted, dyslexic, Jewish, left-handed, colorblind, or genderfluid celebrities are but a Google search away for anyone seeking to celebrate diversity. Activists in the early days of the gay rights movement frequently argued that homosexuality was far more common than assumed. But arguing for a group’s rights on the basis of its ubiquity seems to contradict the foundation of minority rights. So why do we so often do it?

Minority rights advocates know that challengers of a certain group’s fair treatment will often try to portray low numbers as proof of anomaly and anomaly as deserving of a low degree of care. When singer Jason Webley tried—and failed—to defend his Evelyn Evelyn performance, for which he and Amanda Palmer dressed up as conjoined twins raised in the circus, he argued that the number of people who could be hurt by the project was small: “I had some fear that the few conjoined twins living in the world might find the project offensive.” (Emphasis mine.) One commenter sarcastically responded that Webley and Palmer should feel “lucky” that there were so few conjoined twins for them to offend thanks to the fact that the infant mortality rate of the condition is remarkably high.

A man from the U.S. recently complained to me that “LBG-whatever people are like .000001% of the population, but we gotta hear about their rights 24 hours a day!” In 1948, Alfred Kinsey shocked the public when he deduced from his interviews that roughly 10% of the U.S. male population was exclusively gay. The current estimates of openly gay and lesbian citizens are lower than this, but of course the effects of the closet combined with the complexities of self-identification and labels remain a wrench in the work of statistics. But even if studies someday decisively prove Kinsey was overestimating the percentage, they will not disprove the fact that gay people exist in every possible culture and sub-culture. Numbers will rise as shame and secrecy recede, which in turn will cause prejudice to recede. Studies have repeatedly proven that people are less likely to be homophobic if they personally know one or more people who are openly gay. Many more lives would have been saved had there been less homophobia and more funding for research in the first days of the AIDS crisis.

Acceptance is often aided by awareness and awareness is aided by prevalence. This is a frustrating fact for minorities who will always be low in number. Women and ethnic groups may dominate a given country at a given time, but people with intersex conditions or dwarfism will never do so. But while this may be a cause for loneliness—who doesn’t like knowing someone with similar experiences?—it should not be cause for existential threat. The guarantee of liberty and justice for all is founded on the very opposite of this. When liberal democracies commit to equality for all citizens, they commit to protect the few from the tyranny of the majority. In her essay, “What to Expect When You Have the Child You Weren’t Expecting,” philosopher Alice Dreger writes, “Your child’s civil rights and status as a human being should not depend on the prevalence of her condition.” (Emphasis hers. And mine.)

Whether you are a woman with the rarest form of dwarfism or a man with breast cancer or the carrier of a condition not yet named or a wheelchair user facing a staircase, your treatment should never be contingent upon how many others there are out there like you. Equality means rare and common conditions both deserve common courtesy. Whether a condition should be cured, treated or accepted by society should be determined by whether or not it inherently causes suffering. The quicker we learn to wrap our heads around that, the less suffering there will be.

 

 

From the Frontlines of the Women’s March in Berlin

22 Jan

berlin-00

 

German newspapers currently estimate 2.5 million people worldwide—on every continent, including Antarctica—took part in yesterday’s Women’s March.

Earlier this week there was a debate about the mention of disability in the official platform of the March on Washington. Disability advocate Emily Ladau wrote:

My heart sank when I read it.

The first time the word “disabilities” is mentioned, it shows zero recognition of disability as a social justice issue:

We recognize that women of color carry the heaviest burden in the global and domestic economic landscape, particularly in the care economy. We further affirm that all care work — caring for the elderly, caring for the chronically ill, caring for children and supporting independence for people with disabilities — is work, and that the burden of care falls disproportionately on the shoulders of women, particularly women of color. We stand for the rights, dignity, and fair treatment of all unpaid and paid caregivers. We must repair and replace the systemic disparities that permeate caregiving at every level of society.

I also recognize that women of color disproportionately take on the caregiving as a job, that caregiving can be extremely demanding work, and that fair compensation is imperative. But you know what it says to me that this bullet point is one of only two places where disability is mentioned in the entire platform released by the Women’s March? It says that my existence as a disabled woman is a “burden.” My existence as a disabled woman is “work” for someone else. My existence as a disabled woman does not matter.

Disability is mentioned only one more time in the entire platform… And considering that, according to the U.S. Census Bureau, 1 in 5 Americans have disabilities, disability rights deserve more than a cursory mention in the official Women’s March platform.

This touches on two problems: the vast swaths of feminism that ignore the discrimination burdening disabled women, and our macho culture’s fear of men taking on caregiving roles or any jobs done primarily by women. While feminists continue to fight for mandated paid maternity leave, mandated paid paternity leave is widely considered a bridge too far in the United States. Only 12% of American men offered it by their employers take it. Some economists have tried to explain away the election of Donald Trump by talking about the emasculated feelings of male workers facing a paucity of management opportunities in the American Rust Belt and that the only way to appeal to them is to give them jobs that make them the primary breadwinners in their homes once again.

While fair wages and economic inequality should be a paramount concern of any human rights movement, the insistence that men must be the primary breadwinners and will never be satisfied turning to “pink jobs” like caregiving is not highlighting an indisputable truth about all men – it is highlighting a problem in white male American culture.

Those who say the male ego simply cannot budge on the issue need only look to American black men, who pursue caregiving jobs at a rate 3 times higher than white American men do. Or look over here to Germany, where 1 in 5 students in caregiving programs are male. (Eighty percent of German men also took some form of paid parental leave—which is mandated by the government—in 2013.) Or look to the the Dulais Valley coal miners whose true, history-making story was the inspiration for in the 2014 film Pride. In that film, the problem of emasculation is recognized when one of the strike leaders argues against accepting donations from a gay and lesbian group: “Think of the men! It’s bad enough that their wives are financially supporting them, but now they’re relying on a bunch of gays and lesbians?!” Spoiler alert: By the end, the men they’re talking about open their minds. Or demonstrate that they were never concerned about it to begin with.

The Women’s March stated loud and clear that it’s on all of us to open minds about gender roles until our entire culture changes. We feed the denigration of women—not to mention all other forms of xenophobia—when we agree that white men should feel denigrated to do anything traditionally done by women. We need women who would be embarrassed to date a man in a traditionally feminine job to abandon such thoughts. We need men who are tempted to belittle a guy for going to nursing school to prove he is braver than that, until the man who does snicker is the one feeling out of place. And everyone needs to agree that caregiving is freakin’ hard and deserves to be compensated accordingly.

Yesterday’s Women’s March was a resounding success. Despite Ladau’s valid complaints—as well as earlier reports of friction among some white, middle-class feminists and feminists belonging to other minority groups—the day ended up awash in calls for combating injustice faced on the basis of disability, gender, race, sexuality, class, nationality, ethnicity/religion, immigration status, and appearance. In Washington, Gloria Steinem demanded a moment of silence for those who could not be at the March because they had to work in underpaid jobs. Tammy Duckworth got up out of her wheelchair and onto her crutches to demand unwavering defense of the Constitution and the Americans with Disabilities Act. Angela Davis seemed determined in her speech to mention every single marginalized group in the United States and overseas. And when the crowd in Berlin began chanting, “Black lives matter!”, one black woman at the center began singing for joy with tears in her eyes.

There were many signs and songs that not every protestor immediately embraced. One marcher who identifies as queer told me he disliked the portrayals of Donald Trump in drag because being trans or feminine should never be a source of shame. Plenty of marchers of all political stripes expressed unease with blatantly owning the sexualized slurs so many women are the target of. Those of us who are fans of cyborg feminism cringed at gender essentialist references to “Mother Earth” or “natural” womanhood. Others winced at all the swear words. But democracy is hard work. And it was a victory for democracy that millions were willing to march together and engage in an international conversation that sometimes made them uncomfortable. A willingness to leave one’s comfort zone is the first step toward fully embracing and protecting universal human rights.

 

 

Disability & the Politics of Shoe-Shopping

16 Oct

Fashion(Image by Thomas Hawk used under CC 2.0 via)

 

“I like them,” I said, eyeing the smart and slinky black sneakers in my hand, “but my orthotic inserts don’t find inside.”

The saleswoman shook her head sympathetically. “These doctors just don’t understand. They make it so difficult for women looking for shoes.”

Um, I don’t think that’s who’s making it difficult, I said to myself. Because she isn’t the one flooding the market with shoes that discriminate against disabled bodies, it didn’t feel necessary that this one saleswoman be confronted with the issue. But we as a society probably should.

If I don’t wear my orthotics, I burden my achondroplastic back in very unhealthy ways. The same goes if I wear heels regularly, instead of only occasionally, as my orthopedist advises. When I was younger I would often flout the rules, but my tolerance for pain-inducing shoes has lessened since I turned 30 and needed back surgery to avoid paralysis, as one-third of all people with achondroplastic dwarfism do. A friend who has undergone a few operations on her spine absolutely cannot wear heels. Yet wearing orthotics every day is not seen as being healthy and responsible in the same way that, say, running a marathon is.

Will chronic pain management never be seen as bad-ass because it lacks the thrill of breaking records or leaving others in the dust? Or is it because it defies the “no pain, no gain” rule? In which case, foregoing orthotics and swallowing the pain would seem to be the bad-ass choice.

“Oh, I rarely ever wear my orthotics!” two non-disabled women told me years ago.

Eat something sugary or fattening and you can easily attract disapproving looks or even commentary. (“Do you know how many calories/toxins are in that?!”) But risk back pain in a pair of stilettos that make you teeter like a giraffe and you’re suffering for beauty like any self-respecting woman would.

Why? Is it because, as Jessica Valenti wrote last year, too few woman are willing to endure “the social consequences of aesthetic apathy”? Does bodily beauty always require some degree of discomfort? Even the love-your-body yoga crowd pushes the back-to-the-earth barefoot aesthetic, which can be supremely painful for many disabled people.

Fashion is fickle and ever-changing. In a world where humans can find beauty in everything from body-builder biceps to heroin chic, and switch from viewing heels as manly to sexy, it seems possible for us to stop marginalizing and perhaps even some day tout medically responsible choices as fashionable choices. Why haven’t we managed this yet? What will it take to get us there?

 

 

On Catcalls, Body Types & Lasting Love

25 Sep

My latest article, “Disabling the Male Gaze: ‘Longing’ to Be Objectified Won’t Shatter Narrow Beauty Standards” is featured this weekend at Salon. It’s a rebuttal to a recent piece in The New York Times ongoing series on Disability.

 

 

When We Ignore Clinical Trials, We Ignore the People They Protect

11 Sep

Mime/Sleep(Image by Del May used under CC 2.0 via)

 
Back pain is one of the most common causes of sick leave in many Western countries. It is also one of the most common symptoms of achondroplastic dwarfism. The severe curvature of the spine coupled with innate hypotonia (i.e., low muscle tone) results in chronic pain from birth on, at times requiring back-braces and/or surgery to avoid debilitating complications.

I recall being younger than five-years-old, sitting cross-legged on the floor with a book and knowing I couldn’t stay like that for more than a minute or so before the aches would begin. I would usually end up slinking toward the sofa. In primary school I was exempted from sitting on the floor, given a chair with which to tower over my classmates during story-time. Years of physical therapy and orthopedic consultations have done little to alter this reality because the curvature is anatomic. Exercises and ergonomic furniture make the difference between utterly unbearable pain and merely lingering pain. At the end of a three-week stay in Tokyo, I wrote to my partner, “I will miss so many things about this city. Things I will be happy to come home to: couches, chairs with backs, toilets with seats, back support in general.”

A fascinating interview with architect Witold Rybczynski appearing last month in The Atlantic chronicled the history of the chair and the differences between cultures in which people primarily sit on chairs and those in which people, like the Japanese, primarily sit on the floor. The reason for the dichotomy continues to elude researchers:

You’d think, for example, that people in cold, wet climates would be more likely to sit on chairs, so as to avoid the unpleasant ground. But the Japanese, who endure frigid winters, have traditionally sat on floor mats, while the ancient Egyptians, who lived in a warm, dry climate, are thought to have invented the folding stool. Nor is chair-sitting necessarily a matter of lifestyle; some nomadic groups move about with collapsible furniture, while others don’t. Nor is it always a product of economic or technological advancement; the prosperous Japanese were long aware that people in other parts of the world sat on chairs—they just chose not to. Some societies, like China, have transitioned from being predominantly floor-sitting cultures to being predominantly chair-sitting cultures. Others, like India, idiosyncratically mix the two approaches.

California-based acupuncturist Esther Gokhale believes that members of most floor-sitting cultures do not suffer as much back pain as those of us in chair-sitting cultures. National Public Radio’s Goats and Soda program interviewed Gokhale in June about a series of exercises she developed—the Gokhale Method—intended to reshape the Western human spine and rid sufferers of back pain. Doctors in the San Francisco Bay area have been referring patients to Gokhale, and several celebrities have followed suit, despite that her method has not yet been clinically tested. Dr. Neeta Jain demands, “If people are finding things that are helpful, and it’s not causing any harm, then why do we have to wait for a trial?

We should wait for many clinical trials because they would prove decisively whether or not the method is causing any invisible harm, and it would control for preexisting conditions like achondroplasia, cerebral palsy or lupus. While there is no proof that Gokhale’s method cannot lessen back pain for people with achondroplasia, there is also no proof that her one-size-fits-all approach cannot cause more pain or injury to people with achondroplasia as many exercises developed for average bodies can.

As a doctor, Jain is in a position of authority and she is acting irresponsibly when she fails to acknowledge the possibility of unforeseen risks. Perhaps she only refers her patients to Gokhale after screening them for potentially complicating factors, but her statement excludes such caution and instead serves as an advertising slogan.

Perhaps the greatest achievements of modern medicine has been its ability to serve not only the general population but those with rare and exceptionally complex conditions. Yet advice found in the health sections of any mainstream news source tends to overlook those of us with rare conditions and official disabilities. This is a truly ironic form of marginalization, since our lives have undoubtedly been far more affected by issues of health and medicine than the average reader. Going so far as to call it ableism seems extreme, since space is limited from a journalist’s point of view. But it is unfortunate that the best health advice for most people with disabilities is to ignore the mainstream health sources that ignore them.

 

 

Should Jokes About Minorities Be Off Limits?

7 Feb

 
Ofcom, the communications regulator of the United Kingdom, has concluded that comedian Jimmy Carr was in breach of the code of conduct when he cracked the following joke on The One Show last November: “I tried to write the shortest joke possible, so I wrote a two-word joke which was ‘dwarf shortage.’ ” He then looked squarely into the camera and said, “And if you’re a dwarf and you’re offended by that, grow up.”

The scandal at face-value seems odd. Carr’s joke is fantastically boring to those of us with dwarfism. (A joke is indisputably boring if it’s easy to prove that anyone who might attract such a comment and who has graduated primary school has heard it a kajillion times before.) But not only is it far from the most distasteful thing Carr has ever said—his cracks about pedophilia come to mind—but it is far from the cruelest dwarf joke he’s ever made.

In 2009, in an episode of the BBC quiz comedy show QI, host Stephen Fry rattled off a list of 19th-century circus freaks on Coney Island. Trying to suppress a giggle, he said, “There was Bonita—I don’t know why this is funny—the Irish fat midget.”  

The audience exploded with laughter.

Carr immediately looked at Fry agape. “You don’t know why that’s funny?”

I share a love for QI with my partner so fierce that we had once joked about using the theme song for our wedding procession. I also am not skinny,  belong to a family named Sullivan, and have achondroplastic dwarfism, so it’s hard for me to imagine any sort of joke that I could take more personally without it being addressed to me specifically. What better way to be reminded that so many adults would secretly side with the playground bullies if they could than seeing the audience and creators of your favorite show crack up over your very existence?

QI was never reprimanded for it by Ofcom, however, because it is on much later in the evening in the U.K. than The One Show and does not require its guests to sign a form agreeing to comply with family-friendly standards of comportment. Ofcom reports that the BBC responded to its complaint about Carr on The One Show thusly:

The BBC said that “any humour alluding to disability has the potential to offend and, although the BBC received very few complaints on the issue, the One Show’s Editor… sincerely regrets any offence that has been caused by it”. The BBC recognised the “need for sensitivity and careful consideration in respect of the inclusion of material of this nature”. It added that “The One Show is heavily involved with the Rickshaw Challenge initiative that raises money for Children in Need, and in that capacity has worked closely with young people with disabilities including achondroplastic dwarfism. The production team is very well aware of, and sympathetic to, the sensitivities of those affected by disability to humour that alludes to it.”

The problem with imposing standards for offensiveness in humor is that we have all had our jaws drop in disgust, and we have all urged a disgusted person to lighten up. This is why the most current theory about humor is founded on the concept of benign violation. A joke makes you laugh when it strikes the perfect balance between fun and shock. It fails when it comes off as too soft or too harsh.

QI was reprimanded in 2011 for quips about a Japanese man who survived both the Hiroshima and Nagasaki atomic bombings. The show had until then featured many jokes about World War II, but none involving the crimes against humanity, or any specific victim of the war.

In 2013, the satire magazine The Onion for the first time in its history fired a staff member and issued a public apology for referring to 9-year-old Quvenzhené Wallis as “a c**t.” Critics pointed out that sex jokes can be funny, jokes about kids being annoying can be funny, but sex jokes about a specific child referred to by name are indefensible.  

Similarly, Ofcom argues that Carr’s second line (“And if you’re offended by that, grow up!”) is what placed him in breach of the code of conduct. They found unacceptable his “apparent suggestion that those with dwarfism would not be justified if they felt personally offended by his attempt to derive humour from their condition.”

It seems easy to argue why I hope for a day when non-dwarfs no longer double over at the mere mention of my existence, just as they no longer double over at the mere mention of other minorities. Yet it is enormously difficult to argue what to do to ensure that day will come. I began this blog by documenting all the different sorts of media—both the high-brow and the dreadful—that took cheap shots at dwarfs. In the four years since, I’ve never been at a loss for material.

For now I feel we should keep the rules simple. I propose a telecommunications ban on jokes about people with dwarfism except by people with dwarfism. If the public so desperately needs puns about height and size, then give Peter Dinklage and Warwick Davis and Leonard Sawisch and Meredith Eaton more screen time. And if Jimmy Carr thinks that’s unfair, he should grow up.

I know about a limb-lengthening procedure that could help him out.

 

 

Everyone’s Sexuality. Everyone’s.

31 Jan

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From the Archives

Don’t read the comments. Don’t read the comments. Don’t read the comments.

That’s what raced through my mind as I read “The Challenges of Having Sex As A Little Person” at The Atlantic. Of course I read the comments anyway.

And I was only slightly startled to find nothing but solipsistic snickering and overdone puns. The Atlantic doesn’t win any points for ending the article on a pun, either. But praise is due for addressing the topic at all. Based on an extensive interview with Dr. Marylou Naccarato, who has Kniest dysplasia, the article takes a wonderfully sex-positive approach to the experiences of people with dwarfism and the physical obstacles they can face in bed.

As per nearly every feature on dwarfism in the mainstream media, there are some factual errors. For example, one dwarf couple is quoted claiming that people with achondroplasia require “no medication, surgeries, special needs, nothing.” (See here for a list of the many complications we are at risk for.) But Naccarato is doing great work that is revolutionary in light of the fact that Little People of America, and probably most disability advocate organizations, repeatedly shy away from the topic of sexuality.

A simple reason for their silence is that almost all disability organizations comprise just as many parents and relatives of disabled people as disabled people themselves. And who wants to debate the best way to masturbate with Mom or Dad sitting next you? A more sinister reason for the silence is one of the building blocks of modern prejudice against disabled people: that is, the presumption that they are innocent, and therefore asexual. Most positive portrayals of disabled people are cute and cuddly. Is it the only way society can accept us? Refusing to see a minority as anything but asexual is to deny them their full humanity, on par with slut-shaming, prude-shaming, queer bullying, and objectification.

Before I go any further, let me say this: I do not want to talk publicly about what I do in the bedroom and I do not want to know what you do in the bedroom. My firm belief in sex-positive feminism and equality does not mean I think that you are sexy or exciting or impressive. Unless we’re close confidantes or I’ve indicated otherwise, please assume I don’t want any mental images of you and your naughty bits, no matter what they look like.

That said, I fully support anyone’s right to desire any sort of consensual sex imaginable. Without double-standards. Without the pressure of competition. Without the nuisance of others turning their personal preferences into rigid rules.

Take, for example, the way virginity is so frequently turned into not just a game but a high-stakes tournament. When and how did you lose it is an idea all of us are expected to base much of our identity on, even as adults. This is despite the fact that, according to medicine, virginity doesn’t exist. After all, what kind of sex does a guy have to engage in to officially “lose” it? And what about girls born without hymens? When exactly do lesbians lose their virginity?

Like race, virginity is a social construct and, in the words of a very wise person on Tumblr, what can be socially constructed can be socially changed. Last year the great Tracy Clark-Flory interviewed acquaintances about the sexual experience they considered to be their “first time.” The glorious thing about her inclusive project was that it revealed human sexuality to be just as diverse as everything else about us. Some defined their first time by their first orgasm, others by a particular first touch or experience of being touched. The problem with her stretching the definition of “losing your virginity” so broadly is that it robs competitive, insecure people of their ability to set standards with which they can gloat and put others down. Wait, no. That’s another glorious thing about it. There really is no problem with recognizing everyone’s experience as equally valid.

Failing to include everyone not only causes unnecessary humiliation, but it causes us to miss out on opportunities for true enlightenment. To quote the authors of You Can Tell Just By Looking: “Sexual minorities—people whose sexual desires, identities, and practices differ from the norm—do a better job talking about sex, precisely because they are constantly asked to explain and justify their love and their lust to a wider culture and, even, to themselves.” The more you examine harmful traditions, the less necessary they become.

This does not mean that minorities have better sex. Indeed, too many activists in the sexual revolution end up repulsing readers and listeners when they allow pride in their sexuality to devolve into arrogance, insisting their sex life is better than yours, rather than merely different. For a year, the BDSM club at my alma mater ran the slogan: “I do what you’re scared to fantasize about.” Not helpful. And kinda pathetic the more you think about it.

I will never judge someone for liking any particular kind of consensual sex, but I will judge anyone who tries to turn sex into a competition to calm their own self-doubts. Whether you’re a wise-cracking online commenter or a sex-positive pioneer, true sexual liberation is about moving beyond the middle school clique mentality, not indulging in it. It’s pretty much the least attractive thing there is.

Sometimes Beauty Is Easily Recognizable

24 Jan

Fashion Shoes...(Image by Thomas Leuthard used under CC 2.0 via)

 

Sometimes beauty is easily recognizable. Sometimes it’s not. Sometimes fashion is a statement. Sometimes it’s not. Sometimes street photography is a burden for those whose bodies are more likely to be photographed than others’.

Feel free to share your ideas about this, in or outside of the context of the above photograph by Thomas Leuthard.

 

 

 

 

Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.

 

 

We Gotta Watch Our Language When It Comes to End of Life Debates

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)

 

On Friday the British Parliament resoundingly struck down a bill that would guarantee its citizens the right to physician-assisted death. Yesterday California’s legislature voted to make it the sixth state in the U.S. to legalize it.

Robust, nuanced arguments have been made for and against physician-assisted death for terminally ill patients, and none of these arguments could be successfully summarized within a single article. This is why a conclusive stance on the issue will never appear on this blog. It is nothing but moving to hear the deeply emotional pleas from those in the right-to-die movement who have thought long and hard about the prospect of death, who feel empowered by having some choice when facing down a daunting fate, who don’t want to find out which of their loved ones may turn out to be unskilled at care-giving. And it is equally moving to hear the experiences of those working in hospice and palliative care who face the approach of death every day with the determination to make it as minimally painful and emotionally validating as possible for all involved.

However, despite the emotional validity of both sides, there are tactics the right-to-die movement should avoid if it does not wish to make our culture more ableist than it already is. Openness about end of life decisions can shed light on a subject previously cloistered away, but the more the right-to-die movement celebrates the idea of ending someone’s life before it transforms into a certain condition, the less willing the public may be to engage with and invest in those who live in that condition.

Which is why no one should call physician-assisted death “Death with Dignity,” as lawmakers in Washington, Oregon, and New York have done. The implication that anyone who opts out of assisted death might live an undignified life is reckless and arrogant. A patient declaring the prospect of invasive life-saving interventions “too much” is fair. A writer declaring the quality of life of those who opt for them “pathetic” is ostracizing. It insults not only those enduring late-life debilitation, but the everyday conditions of many, many disabled people of all ages around the world.

Even today, when so many movements push to integrate disabled people into the mainstream, the average person is generally isolated from the reality of severe deformity, high dependence, and chronic pain. This isolation feeds fear and is therein self-perpetuating. As opponents have pointed out, many right-to-die arguments quickly snowball, equating terminal illness with chronic illness and disability, and portraying all three as a fate worse than death. Hence the name of the New York-based disability rights group Not Dead Yet.

Vermont’s recent law, the Patient Choice and Control Act, bears a far less polemic name than the others currently on the books. That’s a start. Experts are divided as to whether the current openness about end of life decisions in the U.S. has led to more terminally ill Americans considering and opting for hospice and palliative care. Regardless, both sides should be encouraging well-informed discussions that honor a patient’s right to voice his beliefs based on personal experience, and a disabled person’s right to not be further marginalized by a culture that has historically feared her existence.

 

*Note: I use “physician-assisted death” and other terms in deference to World Suicide Prevention Day this past Thursday and the media guidelines from the Center for Disease Control, which discourage use of the word “suicide” in headlines to avoid contagion.

 

Happy Birthday, ADA!

26 Jul

 

This week marks the 25-year anniversary of the passing of the Americans with Disabilities Act. As others have noted, the law was ground-breaking not only because of its international ripple effect, but because it recognized disability not as an issue of health, but of human rights.

Author of the bill, Robert L. Burgdorf, Jr. writes in The Washington Post why this was so necessary:

People with disabilities were routinely denied rights that most members of our society take for granted, including the right to vote (sometimes by state law, other times by inaccessible polling places), to obtain a driver’s license, to enter the courts and to hold public office. Many states had laws prohibiting marriage by, and permitting or requiring involuntary sterilization of, persons with various mental or physical conditions, particularly intellectual disability, mental health conditions and epilepsy. A number of states restricted or denied the right of people with mental disabilities to enter into contracts. Several U.S. cities, including Chicago, Columbus and Omaha, had what became known as “ugly laws” that banned from streets and public places people whose physical condition or appearance rendered them unpleasant for other people to see. These laws were actually enforced as recently as 1974, when a police officer arrested a man for violating Omaha’s ordinance.

In some instances, discrimination threatened the very lives of individuals with disabilities: Lifesaving medical treatments that would routinely have been made available to other patients were denied to patients with disabilities; in 1974, the New York Times cited an estimate that unnecessary deaths of babies with disabilities in the U.S. resulting from withholding of medical treatment numbered in the thousands each year.

Things have improved substantially, which is cause for celebration. But not complacency. Which is why NPR’s article “Why Disability and Poverty Still Go Hand-In-Hand” is well worth your time, as is the above TED Talk by the late, great Stella Young, whose unexpected death last winter was a tremendous loss to the disability rights movement and to anyone who enjoys a good dose of sarcasm with their social critique.

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org

 

 

Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)
The Nationwide Youth Games (Bundesjugendspiele) are a 95-year-old annual tradition here in Germany wherein students ages 6 to 16 spend a day competing against each other in track and field, swimming, and gymnastics. The total scores are read off in a ceremony before the entire school, and those who accumulate a certain number of points are awarded either a “certificate of victory” or a “certificate of honor.” Since 1991, “certificates of participation” have been handed out to the rest of the students.

After her son came home sobbing at having received a mere certificate of participation two weeks ago, journalist Christine Finke started an online petition to put an end to the Games. She explains on her blog:

I’m doing this for all the children who feel sick to their stomach the night before the Nationwide Youth Games, for those who wish they could disappear into the ground during the Games, and for those who want to burst into tears during the awards ceremony… Sports should be fun and make you feel good about your body. But the Nationwide Youth Games are founded on grading: on the upgrading and degrading of some at the expense of others.

She dismisses the Games as a relic of the Nazi era, and while the original Reich Games preceded Hitler, founder Carl Diem did go on to be active member of the regime who instrumentalized the Games as propaganda for the Nazi obsession with bodily perfection. Finke points to the Nazi-like language of her critics on Twitter: “Our children shouldn’t be allowed to turn into sissies.”  Indeed, mottos such as Only the strong survive commonly found in sports culture in the U.S. and other countries are not taken lightly here in Germany, where sick and disabled citizens were murdered in mass numbers less than a century ago. 

As a semi-disabled kid, I had plenty of physical limitations, but, like most kids, I enjoyed the sports that I could play fairly well (baseball, tennis, jump rope) and I quickly got bored with those that put me at the bottom of the class (basketball, football, soccer).  Due to the vulnerability of the narrow achondroplastic spinal column, I wasn’t ever allowed to participate in gymnastics, and contact sports were forbidden after the age of 10 when my peers began to tower over me.  I countered the feelings of exclusion with feelings of pride for holding the pool record for staying underwater (1 minute 15 seconds), and for surpassing everyone in the joint flexibility tests. But what about the kids whose bodies ensure that they will never surpass anyone else in any competition? The best advice I ever got came from my primary school physical education teacher: “If you had fun, you won.” 

But then came adolescence, and with the onset of puberty, the body suddenly is no longer merely something that gets you from place to place. It becomes an object you are expected to sell to others in the brutal competition of dating and mating. It’s no wonder that an almost debilitating self-consciousness encompasses so many, whether in the form of sitting out of sports, refusing to ever dance or, in extreme cases, developing disordered eating habits.

I asked adult German friends how they felt about the Games. “It is the most humiliating memory I have from school!” one responded.

“It’s more likely to teach people to stay far, far away from sports for the rest of their lives, rather than inspire them to be more physically active,” argued one mother.

“Ach, it wasn’t humiliating,” insisted one man. “It was boring. It was all about skipping out to go smoke cigarettes while the super-athletes had their fun.”

“Exactly!” chimed another. “No one cared about it except the ones who won everything.”

I spent my high school years as the scorekeeper for the girls’ volleyball team at the urging of one of the two coaches, whom I both admired greatly. Throughout three years of volleyball games, I witnessed edifying examples of cooperation and self-confidence, and I witnessed a lot of childishness and borderline cruelty from overemotional adults as well as teens.

From that time on, I’ve generally viewed competitive sports the same way most people view rodeos or yodeling clubs – i.e., good for you if you derive joy from that sort of thing, but the competitions and the medals say nothing to me about whether or not you’re a lovely person. 

Of course athletic achievement can signify important life skills like self-discipline and team work, as a recent Michigan State University study has found. But sports are not necessary for developing those skills. Self-discipline can also be demonstrated by reading two books a week or vowing to learn a foreign language and actually doing it.  Tolerance, self-confidence and decisiveness has been shown to increase among students who study abroad.  Team work can be learned from playing in a band.  Or, as LeVar Burton taught us on Reading Rainbow, an aerobics-inspired dance troupe. 

In arguing to keep the Games, physical education teacher Günter Stibbe says, “Sports are brutal, of course.  But students have to learn how to deal with humiliation.”

Indeed, narcissism is characterized not just by excessive bragging but also by reacting badly to criticism or failure.  Performing poorly in sports—or in any field—can be an opportunity to learn to accept all the moments in life when you won’t be seen as special. But the idea that the body is only worth what it can do is deleterious. And too many educators fail to teach students the dangers of being too competitive and fearing weakness

The heavier burden may in fact fall on those who come out on top in high school and risk later panicking when they learn that the big wide world doesn’t really care about how many points they accrued in the discus throw back when they were 16.  Both the losers and the winners would benefit from learning that athletic competitions in youth are no more important than rodeos or yodeling competitions at any time in your life.  After all, points and medals are no indication of whether or not you’ll know how to pursue healthy relationships, be a responsible member of your family and community, or find a fulfilling career. Those who heavily brag on into adulthood about how hard they just worked out down at the gym—or how many books they read, or how much they earn—usually appear to be compensating.

This is perhaps why Stibbe criticizes the tradition of reading of the scores in front of the whole school as “pedagogically irresponsible.”

But in Der Spiegel’s online survey, there is no option for arguing for the Games on the grounds of sportsmanship and accepting one’s limitations. The two arguments to click on to support the tradition are “For God’s sake! It was the only thing I was ever good at in school!” and “What else would we do with our crumbling race tracks?” The majority of the 57,000+ respondents chose the latter.